Needs and preferences for psychological interventions of people with motor neuron disease

Abstract

Background: There is a lack of knowledge about what factors may impede or facilitate engagement in psychological interventions in people with motor neuron disease (pwMND) and how such interventions can be adapted to best meet the needs of this population. Objectives: To explore the needs and preferences of pwMND with respect to psychological interventions, and how best to adapt such interventions for pwMND. Methods: A series of semi-structured interviews (n = 22) and workshops (n = 3) were conducted with pwMND (n = 15), informal caregivers of pwMND (n = 10), and MND healthcare professionals (n = 12). These explored preferences and concerns that would need to be considered when delivering a psychological intervention for pwMND. Three areas were explored: (i) perceived factors that may hinder or facilitate pwMND engaging with psychological interventions; (ii) ways in which such interventions could be adapted to meet the individual needs of pwMND; and (iii) views regarding the main psychological issues that would need to be addressed. Workshops and interviews were audio recorded and transcribed and thematic analysis was used to inductively derive themes. Findings: Data could be classified within four overarching themes: unfamiliar territory; a series of losses; variability and difficulty meeting individual needs; and informal support. Conclusions: Flexibility, tailoring interventions to the individual needs of pwMND, and encouraging autonomy are key attributes for psychological interventions with pwMND. Psychological interventions such as Acceptance and Commitment Therapy (ACT) could be acceptable for pwMND if adapted to their specific needs.

Keywords:

• Motor neuron disease
• psychological interventions
• qualitative research

Acknowledgments

The authors would like to express their gratitude and thanks to all of the participants who took part in the interviews and workshops, the Patient and Public Involvement representatives who reviewed themes and the Motor Neurone Disease Association for their assistance with recruitment. The views expressed are those of the authors and not necessarily those of the NHS, the NIHR or the Department of Health and Social Care.

Disclosure statement

The authors report no conflicts of interest. The authors alone are responsible for the content and writing of this article.

Additional information

Funding

Motor Neurone Disease Association 10.13039/501100000406. NIHR Health Technology Assessment (HTA) Program 10.13039/501100000664. NIHR Biomedical Research Center at University College Hospital London, Sheffield, South London & Maudsley NHS Foundation Trust, King’s College London. This work was funded by the NIHR Health Technology Assessment (HTA) Program (ref: 16/81/01) and the Motor Neurone Disease Association. This research was also supported by the NIHR Biomedical Research Center at University College Hospital London, Sheffield, South London & Maudsley NHS Foundation Trust and King’s College London.